Myths and Facts

Everyone infected with hepatitis C will eventually die from hepatitis C.
Not true. One of the most difficult aspects of counseling people with regard to hepatitis C is the varied course that the disease may take from one person to the next. This can be a result of multiple factors including: lifestyle decisions such as the consumption of alcohol, underlying health conditions, which may suppress the immune system, such as diabetes or HIV, the time of infection with the virus, and the strength of the strain of virus with which a person is infected. The virus can run a relatively short course to liver destruction in a few brief years or the virus can infect a person for more than 60 years without that person developing liver failure. This variance in symptoms makes decisions with regard to managing hepatitis C difficult, as they must be individualized. One way in which these decisions can be individualized is through analysis of information obtained on routine serum blood test, through physical examination and a detailed review of body systems, and, finally, through the gold standard for assessing the extent of liver disease - the liver biopsy. The liver biopsy affords the opportunity to look at a piece of the liver under a microscope and assess exactly the extent of liver damage.

Medical treatment is always difficult for the person with hepatitis C.
Not true. The standard treatment for hepatitis C is either Interferon or Interferon in combination with Ribavirin. These drugs modulate the immune system to help it attack the virus and suppress inflammation in the liver as well as inhibit fibrosis, which is the laying down of scar tissue. One of the main concerns with hepatitis C is that the treatments have significant side effects that can range from flu-like symptoms consisting of fevers, joint aches, and malaise or fatigue to frank depression and even occasionally psychosis. Hepatitis C Internet chat rooms are filled with horrendous tales of anguish about treatment. Balance needs to be used while assessing these reports. Nevertheless, there are people who take these treatments without noticing any side effects whatsoever. Therefore, side effects need to be monitored closely and treatment tailored to each individual as they proceed forward with medication.

Hepatitis C is easily transmitted sexually.
Not true. It is remarkable how difficult it is to transmit hepatitis C through sexual intercourse. As it turns out hepatitis B, another hepatitis virus, is one of the easiest systemic infections to transmit through sexual contact. HIV, with which we are all familiar as the cause of AIDS, is actually more difficult to transmit sexually than hepatitis B. Hepatitis C has been associated with a slightly increased risk of transmission in people with a history of multiple sexual partners and those with other sexually transmitted diseases. Nevertheless, in monogamous couples, one of whom is infected with hepatitis C, the rate of transmission over decades of intercourse is relatively negligible. It is in the range of one to two percent, which may be confounded by other routes of transmission as well. Use of barrier contraceptives seems prudent, and the CDC (Center for Disease Control) recommends contraceptive use particularly for those with multiple sexual partners.

Hepatitis C symptoms will not bother me if I take care of myself.
Not true. While it is generally true that hepatitis C is more aggressive in individuals that consume large quantities of alcohol or have other health problems, it is not universally the case. Even in the individual who abstains from drinking, exercises regularly, and eats appropriately, the disease can progress to liver failure and lead to death.

I can cure hepatitis C by taking natural herbs and alternative medications.
Not true. As it turns out, there are remarkable quantities of over-the-counter tonics and alternative health elixirs for hepatitis C. This is a multibillion-dollar-a-year industry that has sprung out of the frustration of the subset of individuals unable to be cured by traditional medical therapy. Given the financial incentives for herb and alternative medicine sales and the lack of regulation of this important market, a great deal of prudence is appropriate. It is important to remember that the purveyor of milk thistle need not demonstrate that the “treatment” is effective to the FDA the way that all pharmaceutical companies must. Currently, there are many trials underway to study many of these particular tonics, but the vast majority of them appear to be about as useful as placebo pills. However, we need to wait for the final results of these studies and maintain an open perspective. It is quite reasonable to expect that some of the tonics that are antioxidants, such as Vitamin E, may have some benefit. This is an area where recommendations are evolving and the most important caveat is for the infected individual to have a healthy dose of skepticism when analyzing any claims of cure with plant extracts or other tonics. Certainly some of these agents may merit use, but we are relatively inexperienced in being able to define which of these alternative therapies is the best for people to take. Undoubtedly, some of these tonics can be dangerous and it's prudent for people to always keep their physicians aware of alternative medicine use.

A man taking Interferon in combination with Ribavirin shouldn't worry about impregnating a woman while on treatment.
Not true. Interferon and Ribavirin carry strict precautions for people to use two forms of contraception during treatment and for six months following treatment. People are strongly advised to use cautious contraception because the drug causes birth defects and is actually quite potent at causing fetal loss as well. While the experiences of people becoming pregnant while on the treatment is fairly limited, it appears that it is quite difficult for women who are taking the medication to get pregnant due to fetal toxicity. Should a woman get pregnant while on Ribavirin, the concern of damage to her fetus is quite deep. The impact on men is more difficult to assess. Ribavirin has been detected in the semen of men taking the medicine. Since it does cause fetal loss and birth defects, it raises a great deal of concern that even men taking Ribavirin may father children with birth defects or induce fetal loss. It is therefore extremely important for people to heed the advice of using two forms of birth control while taking the medication. The reason for the recommendation that birth control be continued for six months following treatment is that Ribavirin lingers in the body for a very long period of time, even after you stop taking it. So, you’re not completely out of the woods nor are you safe from the risks of birth defects and fetal loss until six months after treatment has stopped.

There is no point in taking Interferon and Ribavirin if cirrhosis (liver scarring) has already set in.
Not true. Actually, while the response rate to treatments may be somewhat lower in patients with more advanced liver disease, the benefit of treatment may be amplified in the sense that further liver failure may be delayed by placing someone on treatment. Assuming that platelet and white blood counts are at adequately high levels and decompensated liver disease has not set in, it is actually quite reasonable to treat people who already have cirrhosis or scarring of the liver. This decision to treat or defer therapy needs to be made on an individual basis.

Everyone should be placed on Interferon for years and years, even if they don't clear the virus.
Not true. The decision to treat hepatitis C needs to be individualized by the treating physician and the patient. Many people may benefit from treatment using FDA-approved regimens, but Interferon treatment is not for everyone due to its side effects and potential toxicities that make it impossible for some people to take Interferon treatment.

For people who tolerate the treatment reasonably well, some people believe that treating hepatitis C with Interferon for periods of time beyond the routine initial six to 12 month period, may be of benefit even if the virus is suppressed, rather than cleared. It turns out that Interferon appears to inhibit the formation of scar tissue in the liver and so even in the fifty to eighty percent of people infected with the virus who do not respond persistently to treatment, there may be some rationale for long-term suppressive treatment with Interferon. This question is being studied in a National Institutes of Health-sponsored multi-center trial as well as being studied in drug company-sponsored trials. Nevertheless, there are some physicians who advocate treating everyone with suppressive Interferon therapy. As the risk of side effects can accumulate over time it is certainly prudent to consider long-term suppressive treatment. Optimally, this is done in the context of a well-designed clinical trial during which side effects are carefully monitored. People should be aware that the risks of long-term suppressive treatment are still being analyzed.

Once the diagnosis of hepatitis C has been made, you need to put your affairs in order and assume the worst.
Not true. Although the disease can be quite devastating and lead to death in some instances, for many people, the diagnosis of hepatitis C is akin to being diagnosed with other chronic diseases, such as high blood pressure or diabetes, and does not necessarily carry with it a dire outcome in the near future. It is important to maintain this perspective as you interact with your physicians, as a devastating outcome is not predetermined by the diagnosis. Chronic liver disease rose to one of the top ten causes of death in this country in 1998 according to CDC statistics. It is predicted that the need for liver transplant will increase five hundred percent between 1998 and 2008, in large part due to hepatitis C. Many people are likely to become personally touched by this illness, whether they have a friend, family member, or they have the disease themselves. However, it is important to keep in mind that this is not always the outcome for everyone.

Everyone with hepatitis C is depressed.
Not true. Not everyone with hepatitis C is depressed, although being chronically ill can cause people to feel down. One of the risks of treatment with Interferon is increasing anxiety or depression, and it is often difficult to determine whether these effects are due to the illness itself or due to the effects of treatment. It is important to remain aware of the risk of depression and treat it appropriately, if indicated.

Hepatitis C has been infecting millions of Americans for decades, but it is only within the last decade that routine tests have been available to help identify the millions who are infected and offer anti-viral therapy. Great strides have been made against this pernicious condition with persistent elimination with current treatments being achieved for many. For those who remain infected, there is a tremendous amount of hope as we develop a better understanding of lifestyle modifications and new treatments that may suppress or help clear the virus in the future. Even when liver failure ensues, the lifesaving option of liver transplantation is a reality for thousands of Americans due to the altruism of liver donors. Further advances are under development as the medical community rushes to serve the millions of Americans whose livers are under the attack of hepatitis C, and the future holds the promise of medicines that may cure a large portion of the population infected with this chronic virus

A special blood test must be done to find out if you have hepatitis C. We recommend an antibody test as the first step. If the antibody test is positive or if you are taking immune suppressive medications, you should also have a test for the virus itself. The test for the virus itself is called HCV RNA, PCR, branched-chain DNA, Amplicor and other names.

When you're speaking to your doctor, remember that your alanine aminotransferase (ALT) level does not reflect the severity of hepatitis C or your viral load. Many people with chronic hepatitis C have normal ALT levels. You may need further testing to see how severe the inflammation is, even when ALT levels are not very high.

Can you have a "false positive" anti-HCV test result?
Yes. A false positive test means the test looks as if it is positive, but it is really negative. This happens more often in persons who have a low risk for the disease for which they are being tested. For example, false positive anti-HCV tests happen more often in persons such as blood donors who are at low risk for hepatitis C. Therefore, it is important to confirm a positive anti-HCV test with a supplemental test as most false positive anti-HCV tests are reported as negative on supplemental testing.

Can you have a "false negative" anti-HCV test result?
Yes. Persons with early infection may not as yet have developed antibody levels high enough that the test can measure. In addition, some persons may lack the (immune) response necessary for the test to work well. In these persons, research-based tests such as PCR may be considered.

How long after exposure to HCV does it take to test positive for anti-HCV?
Anti-HCV can be found in 7 out of 10 persons when symptoms begin and in about 9 out of 10 persons within 3 months after symptoms begin. However, it is important to note that many persons who have hepatitis C have no symptoms.

How long after exposure to HCV does it take to test positive with PCR?
It is possible to find HCV within 1 to 2 weeks after being infected with the virus.

Unlike antibody tests, HCV RNA tests directly measure for the presence of the hepatitis C virus. HCV RNA tests may be qualitative or quantitative. Qualitative HCV RNA tests are used to diagnose hepatitis C. Your doctor might choose to perform an HCV RNA test instead of the ELISA, especially if you are at high-risk for hepatitis C. The HCV RNA test will be positive in as little as 1 to 2 weeks after exposure. A positive HCV RNA test means a person has hepatitis C infection.

Quantitative HCV RNA tests allow your doctor to determine exactly how much virus is in the blood. This is referred to as the viral load. The viral load is usually expressed as units per milliliter or copies per milliliter. In patients with chronic hepatitis C infection, viral loads vary widely from 50,000 to 5 million copies per milliliter. A higher viral load may not necessarily be a sign of more severe or more advanced disease but it does correlate with likelihood to respond to treatment. HCV RNA tests can also be used to monitor response to hepatitis C treatment. For example, if the viral load decreases during treatment, this suggests that treatment is working and should be continued. Conversely, if the viral load remains the same, it suggests that the patient is not responding to treatment.

The ALT test is a blood test that measures levels of alanine aminotransferase (ALT), a liver enzyme that is produced in higher amounts when the liver is inflamed. High ALT levels can be a sign of hepatitis C, but other conditions can also cause an increase in ALTs, including heart attacks, high triglyceride levels, and other forms of hepatitis.

On the other hand, many people with hepatitis C have fluctuating or normal ALT levels, so a normal ALT test does not necessarily mean that hepatitis C infection can be ruled out.

ALTs are measured in routine blood tests so if your annual blood work results indicate high ALT levels, this may alert your doctor to do further tests to find out the cause.

If you do test positive for hepatitis C, your doctor or the specialist to whom you've been referred will probably order a genotyping blood test.

The hepatitis C virus has at least six distinct forms, or genotypes (labeled 1 through 6). In the United States, about 70% of patients have HCV genotype 1. In other parts of the world, other genotypes are more common. Genotype 1 is associated with a poorer response to treatment. Genotyping can help your doctor determine the appropriate hepatitis C treatment and how long treatment should be given.

Another common test used to classify hepatitis C is the liver biopsy, in which a small piece of liver is removed and examined under a microscope. Many doctors do a liver biopsy whenever a patient has a high alanine aminotransferase (ALT) level (which suggests that the liver is inflamed) to help them confirm what exactly is causing this problem and how serious it is. A liver biopsy can help your doctor or specialist determine how much damage has been done to the liver.

When the liver is damaged (for example, by the hepatitis C virus), it tries to repair itself and forms small scars. This scar formation is called fibrosis. A greater amount of fibrosis indicates more severe and more advanced disease. Based on the results of the liver biopsy, you and your doctor will be able to make more informed decisions regarding treatment. For example, if you are found to have normal or only slightly higher than normal ALT levels and little or no fibrosis on liver biopsy, your doctor may decide to postpone treatment because this type of chronic hepatitis C has little chance of progressing to cirrhosis. On the other hand, if the degree of fibrosis is moderate to severe, your doctor may decide to begin treatment immediately.

Liver biopsy is done in the hospital and requires local anesthesia. You can also ask your doctor to give you something for pain before the procedure. We all recommended it here at Janis and Friends.

Your doctor has other tests available, too. Don't be afraid to ask what tests he or she has done, what other tests are available, and what the tests may tell you about your condition. Get all copies of your blood work before you leave the doctors office.

Hepatitis C is a viral infection of the liver which had been referred to as parenterally transmitted "non A, non B hepatitis" until identification of the causative agent in 1989. The discovery and characterization of the hepatitis C virus (HCV) led to the understanding of its primary role in post-transfusion hepatitis and its tendency to induce persistent infection.

HCV is a major cause of acute hepatitis and chronic liver disease, including cirrhosis and liver cancer.

Globally, an estimated 170 million persons are chronically infected with HCV and 3 to 4 million persons are newly infected each year. HCV is spread primarily by direct contact with human blood. The major causes of HCV infection worldwide are use of unscreened blood transfusions, and re-use of needles and syringes that have not been adequately sterilized.

No vaccine is currently available to prevent hepatitis C and treatment for chronic hepatitis C is too costly for most persons in developing countries to afford. Thus, from a global perspective, the greatest impact on hepatitis C disease burden will likely be achieved by focusing efforts on reducing the risk of HCV transmission from nosocomial ³exposures (e.g. blood transfusions, unsafe injection practices) and high-risk behaviours (e.g. injection drug use).

Hepatitis C virus (HCV) is one of the viruses (A, B, C, D, and E), which together account for the vast majority of cases of viral hepatitis. It is an enveloped RNA virus in the flaviviridae family which appears to have a narrow host range. Humans and chimpanzees are the only known species susceptible to infection, with both species developing similar disease.

An important feature of the virus is the relative mutability of its genome, which in turn is probably related to the high propensity (80%) of inducing chronic infection. HCV is clustered into several distinct genotypes which may be important in determining the severity of the disease and the response to treatment.

The incubation period of HCV infection before the onset of clinical symptoms ranges from 15 to 150 days. In acute infections, the most common symptoms are fatigue and jaundice; however, the majority of cases (between 60% and 70%), even those that develop chronic infection, are asymptomatic.

About 80% of newly infected patients progress to develop chronic infection. Cirrhosis develops in about 10% to 20% of persons with chronic infection, and liver cancer develops in 1% to 5% of persons with chronic infection over a period of 20 to 30 years. Most patients suffering from liver cancer who do not have hepatitis B virus infection have evidence of HCV infection. The mechanisms by which HCV infection leads to liver cancer are still unclear. Hepatitis C also exacerbates the severity of underlying liver disease when it coexists with other hepatic conditions. In particular, liver disease progresses more rapidly among persons with alcoholic liver disease and HCV infection.

HCV is spread primarily by direct contact with human blood. Transmission through blood transfusions that are not screened for HCV infection, through the reuse of inadequately sterilized needles, syringes or other medical equipment, or through needle-sharing among drug-users, is well documented. Sexual and perinatal transmission may also occur, although less frequently. Other modes of transmission such as social, cultural, and behavioural practices using percutaneous procedures (e.g. ear and body piercing, circumcision, tattooing) can occur if inadequately sterilized equipment is used. HCV is not spread by sneezing, hugging, coughing, food or water, sharing eating utensils, or casual contact.

In both developed and developing countries, high risk groups include injecting drug users, recipients of unscreened blood, haemophiliacs, dialysis patients and persons with multiple sex partners who engage in unprotected sex.

In developed countries, it is estimated that 90% of persons with chronic HCV infection are current and former injecting drug users and those with a history of transfusion of unscreened blood or blood products.

In many developing countries, where unscreened blood and blood products are still being used, the major means of transmission are unsterilized injection equipment and unscreened blood transfusions. In addition, people who use traditional scarification and circumcision practices are at risk if they use or re-use unsterilized tools.

How is hepatitis C spread? Who's at risk?

Hepatitis C virus (HCV) is transmitted through contact with an infected person's blood. The following list outlines sources of hepatitis C transmittal:

-Blood and blood product transfusions;

-Sharing needles and syringes (IV drug abuse);

-Other possible risk behaviors: tattoos, body piercing, living and medical care in a developing country, folk medicine, intranasal cocaine;

-Extensive surgical procedures

-Unknown--up to 5% of patients have no identifiable risk factors;

-Sexual transmission is rare; the risk of sexual transmission to an individual is probably less than 3% when a person is in a stable monogamous relationship;

-Vertical transmission from mother to baby;

HCV Mother-to-child transmission: HAART May Reduce HCV MTC; C-Section Did Not Reduce MTC - (03/15/06)

-Reused needles in a medical or health care setting.

Is hepatitis C transmitted sexually?

According to studies in the Journal of the American Medical Association, a low sexual transmission rate of hepatitis C was suggested. Of the 62 patients studied, none of the monogamous heterosexual partners had developed the hepatitis C antibody. In general, the probable risk of heterosexual transmission of hepatitis C is less than 3%.

It is recommend that all patients in a non-monogamous relationship use a condom or spermicide and patients in a monogamous relationship use a barrier method only if they are anxious or concerned about transmission. All non-monogamous individuals should use safe sex practices.

For patients with hepatitis C, testing of spouses, babies and significant others is recommended by Centers for Disease Control(CDC). Please discuss these issues with your physician.

Is hepatitis C transmitted by breast milk to infants?

There is no substantial evidence that hepatitis C is transmitted through breast milk, however, a few studies have been performed that tested breast milk and very rarely is hepatitis C found in the breast milk--even using the most sensitive tests such as PCR. The CDC has issued a statement explaining that mothers who have HCV can breast feed, but should avoid it if there are sores around the nipple.

Can hepatitis C be transmitted to other members of my family (household contacts)?

There is a slight risk of hepatitis C transmission among household contacts, so family members should not share items such as razors or toothbrushes that may transmit blood or secretions. Women who have hepatitis C and are menstruating as well as men or women with hepatitis C and sores in the genital area should avoid sexual contact. The CDC recommends that spouses or partners of a hepatitis C patient be tested for hepatitis C.

Can a pregnant woman give hepatitis C to her baby?

A report in New England Journal of Medicine suggested a 7% transmission rate of hepatitis C from mother to child at birth. Though this is a high estimate, the possibility of transmission must be considered when a woman with hepatitis C is deciding whether to have children.

For infants who have received the hepatitis C virus from their mother, brief elevations of liver enzymes may occur, but no chronic liver disease has been reported. There have been no reports of cirrhosis in newborns, infants or child due to mother-to-child hepatitis C infection. It is recommended that all babies born to mothers with HCV be tested annually until age three with antibody tests.

Women with AIDS and hepatitis C are at high risk for transmitting the virus to their babies, and research has shown that these women consistently transmit the virus to their babies at birth.

Is hepatitis C transmitted by insects?

There is no documented transmission of hepatitis C through insects. The virus, however, is related to a group of viruses including yellow fever and Dengue, and those are known to have been spread by insects.

Can transmission of hepatitis C be prevented by immune globulin?

No. There is no data to support giving immune globulin to prevent infection after acute exposure.

WHO estimates that about 170 million people, 3% of the world’s population, are infected with HCV and are at risk of developing liver cirrhosis and/or liver cancer. The prevalence of HCV infection in some countries in Africa, the Eastern Mediterranean, South-East Asia and the Western Pacific (when prevalence data are available) is high compared to some countries in North America and Europe.

WHO Region	Total Population (Millions)	Hepatitis C prevalence Rate %	Infected Population (Millions)	Number-of countries by WHO Region where data are not available
Africa	602	5.3	31.9	12
Americas	785	1.7	13.1	7
Eastern Mediterranean	466	4.6	21.3	7
Europe	858	1.03	8.9	19
South-East Asia	1 500	2.15	32.3	3
Western Pacific	1 600	3.9	62.2	11
Total	5 811	3.1	169.7	57